And you get

this our first kind of

moment across our lives.

Just to walk in this room.

This.

Way.

I consider Jack and.

The kinds of things that we do together.

So we were in working
groups like the time.

We were doing.

Over the course of last week.

We found people who have interests so
that they could share with each other.

Had a wonderful this year
of actually extending that.

Here a little bit more about
what people are doing and way.

We have and I think that's a great.

After something like that
to be able to you are.

The person who.

Have tapped to try to
coordinate a particular.

Sort of play where trying to get
a flight and we have to make.

The way we're very innovative are right

now I want her to dance.

About what I asked her to do our
new Center for Urban we have.

Turned our strength.

Pretty and urban issues that are very.

Problems and in particular ways where

you are.

Around as many of them are so

I head for urban.

To try to figure out how we
are clustering in urban related things.

We do in a large community.

In the face challenges.

So she would have a way of

that day.

But the main thing is that we

have a collective of people who
are doing related things related to the.

Things related to

education to.

The way in which you would be
spend their time Earth and space.

Issues related to.

The Spirit.

And we're hoping that
with your collaboration.

We'll be able to bring.

To work done in the much
more coherent way.

So in her absence.

I would say that I would give you
the charge of making sure that if

you're in category.

Talk about trying to.

Today on our day you're going
to have to help me here.

So.

City.

And there is no way I can remember.

I have incorporated so.

I think it's great.

So.

OK so you're here

with that kind of way and
the first group that we're going to have.

They're connecting with that
in some way that we have

expanded access at a disparity.

The two people are going
to be pulling through.

There.

Three people in the house
with Roberta very.

Moderated group.

So instead of my continuing to
talk to how excited I hear or

how excited I am for is leadership urban.

Or how excited I am particularly.

That we would hear about today.

I think you would rather
hear about the research.

So if it's just come right.

Thank you.

I've been inspiration and

leadership teaching.

Gratian and.

Thanks for the inspiration that all
of us in this room in our college.

We are fortunate.

Are doing very important work in this.

I'm going to introduce them in order.

And she's going to place.

More than fifteen minutes.

Of current.

Beginning to explore opportunities for
collaboration.

So.

Can the University of San Francisco and
specialize

in science and technology studies
on her back in the industry and

researchers at the research
currently focused on

technologies on the treatment
of spectrum disorders.

Dr.

Dr is being here.

Dr Pierce.

From University of Cambridge where
he was a Churchill scholar and

study computational biology.

Of public medical
research in two thousand.

Career award.

In the impact of ethical controversy.

And development at scientific years and
now in the middle.

Management Community Research Institute
in implementing government

with a particular interest in
the delivery of populations.

By the American public administration and

recently in two thousand and eleven.

So we're very fortunate to have been
doing important work in the field.

I would like to call Dr.

At the side and come back up here and
moderate a discussion.

Thank you.

I just wanted first part for imitation.

Here today to learn.

Areas of expertise.

And gets started.

It's thinking about big picture ideas and

what my specific work addresses I
study the sociological impact of

technologies idiology definition and
treatment of human diseases and so

this is really an important area of
research because one of the major

priorities of the national level at
least for the last twenty years has been

the development of genetic technologies
that will create the knowledge still yet

and realize promise of gene
therapy pharmacogenomics and

this idea of a personalized medicine for
research really takes a critical

perspective on the persistence of
research on the genetic causes of disease

which I am obscure is a lot
of the focus on the social.

The political the environmental
causes that big ratings rise.

Diseases the research that
I've been focusing on for

most of my sense illogical.

Our system.

So what is the way I describe the research
I do to friends and family is that.

You know I'm pulling away
the curtain science and

just like Toto reveal the wizard
was just man kind of curtain.

I'm interested in revealing how
the science is being conducted.

The motives the politics and the
perceptions as well as the consequences.

Science has for people experiencing.

Human rights.

To some of the central questions
of my research address you know

who are the actors producing
knowledge around technology

designed to understand
how do you diagnosis and

treatment who are the people involved
what contributions to they may

what voices are heard and how the social
location really affects one's ability.

To.

To be involved in the process.

Knowledge production disease.

Second how would you know that technology
is changing what constitutes disease and

how does this affect the results of shifts
and changes in the diagnostic boundaries.

As well as identities people my race.

What are the bio ethics of
participating in genetics research and

how the research findings.

If they're actually distributed.

Affect trajectories and
getting a diagnosis or actually access.

In other words how our research
findings equally distributed and

finally how do people either use or

view the utility of genetic information
in their everyday lives particularly what

barriers stand in the way of using or
accessing emerging gentlemen.

So why did I choose this
direction of research.

So as you heard earlier I come from
a very multi-disciplinary background.

Start an internet access my first.

After graduating college I was
fortunate enough to work with

largest biotech companies in the Bay Area
and you know I fell in love with science.

I still do very much science.

However when I was working
after working there for

eight years I began to question
the empowerment common it was having.

On people on the greater
good of society and so

I really turned to academia to
study the Bible ethics interpreting

technology public health practices and
programs and

that's really what's right for
the very first time to work as you heard

earlier with the artists you know it's
the disease prevention at C.D.C..

And then develop skills that sociologist.

Science Medicine and how technology and
while it's getting my Ph D.

I started working for group that
was really looking at the ethics.

Setting to minutes in the context
of neurological diversity or

difference in autism which.

A study.

Any of us who study and

do research that was a personal interest
as well as my best friend at the time

college my roommate should both
children or just get a diagnosis right.

So I saw this as an opportunity
to learn more about it.

And one of the first right there.

I didn't know much about it was
something a little bit about it.

I didn't know much about it.

I learned from interviewing
people who are self diagnosis.

So this was my entry into this field and
naturally I wanted to

continue this work as I was doing my
dissertation research at the time.

Where I looked at the social and

the scientific understanding
through each other.

The research I've been conducting
literally over the last nine years so

interest rates this you know these
different perspectives of genomics.

How.
So the methodology is so

the work and
that consists mainly of research.

So I interview.

Many people I interview families
who have children with autism or

it's a genetic research scientists
who actually left the science.

You know people who
are diagnosis process treatment.

You know.

People who are experiencing to live.

I also do a lot of textual analysis.

You know scientific literature and media
press documents and things like that.

Observations a big part of my research

continues to grow as I simply
continue to grow here in Atlanta.

So participating at
scientific meetings supposed.

Group meetings marks you name it.

There's many variations on service.

OK So the thing

that I want to share with you today is
really in thinking about the project.

I'm going to highlight some areas of the.

A project that I'm working on that
highlights areas access an opportunity.

And so this project really
critically investigates why

the thoughts of the researcher so
much financial and political support.

To identified for someone who has been
involved in setting these priorities to

pursue the matter mechanisms understanding
autism and what are the social

processes and consequences of viewing
them through a generic lands.

Whether it be for scientists for
clinical researchers for families for

people who are experiencing this.

This project really answered this question

through like I said it's an in-depth
analysis and I'm your analysis of

the social cultural political
process surrounding the odd system.

Genetics research from the late
twentieth century to the present day.

And it really maps out the social
history of print activism in autism

genetics the scientific failure
of actually finding a gene for

autism and the various meanings
attached to autism in the context.

Surrounding autism in
the advent of emergent.

G.'s.

So several hard aspects of this project.

It's address issues of opportunity and
so it's so

first you know I provided storable Account
of How to us current advocacy groups

Foundation and
the National Alliance for access and

research became significant contributors
to the production of genetic knowledge and

they developed and they did this through
developing research initiatives.

So I conducted research on sheep.

It's a very good projects one it's
the arts and you know project.

This is the international data sharing
collective which was developed through

the collaboration of parent advocates and.

The National Institutes of
Health the autism genetic

Resource Exchange the agree.

With is an absolute.

Genetic database that was initially
developed by the current man.

To promote collaborative work on
shared samples so by investigating

the history outcomes of these two projects
I really highlight the octopus that aren't

in science fundraising efforts lobbying
Congress participating in research and

really organizing funding and governing.

Many of the goals of
science their ability to

organize scientists around
to identify them and bridge.

And Brits provide the scientists
to the community.

How might the integument
between out this site this.

Accident and what I'm calling
citizenship and my larger project.

You know they're taken out by
scientists and parents alike and

have fostered a new way of doing science
one that really supports sharing data.

Genetic data collaboration among
actors and I argue that the ships and

scientific norms and practices have
really transformed the current

genetics research and have really
an instant the broader genetics research.

However the social history also highlights
the opportunities that are made available

to us since the parent advocates
involved in these early

movements you know they have a higher
level of social capital So for

example the parents who co-founded Iraq's
now they were Hollywood professionals and

have the ability to use
their social networks and

to raise awareness such as hiring
famous people to service folks.

Because they also have the ability and
time to lobby Washington to bury them or

fund spent on research or Sharon since
she was an established screenwriter

became a lay expert by hiring a tutor
to learn about biology Internet.

It's a disease.

The second advocacy group was
co-founded by parents who were

educated professionals that
psychiatry's lawyer so

because of their social location they too
are also able to gain legitimacy within

the scientific community and they have
the resources to establish a research and

research foundation
dedicated to odds as well.

This is a wonderful example of how science
gets transformed from the ground up.

It also highlights the benefits
social location and

access to resources can have
on initiating and make change.

So these resources are clearly
not available to everyone and

this can limit the diseases
that get noticed and

what issues are addressed as most
central to particular communities.

Another aspect of this project
highlights how opportunity and access to

participate in genetics research are often
fraught with a range of diverse motives.

I investigated the development
participation and use of the largest

privately funded autism genetic database
called the Simon simplex collection and

so I take into account the various forms
of current motivation to participate in

this genetic research study in contrast to
the scientific and rational processes of

data collection in this case I highlight
the diverse sets of expectations and

values attached to the motivation of
scientists the collective use genomic data

to those families who live and
medical information systems that

experience search and I found that many of
the parents participated in this genetic

database really to gain access to
a clinical diagnosis of autism in this

class where three thousand dollars
parents also anticipated that part

of their participation would really open
up opportunities for treatment services.

That's in this case because this
case draws attention to the specific

social structural issues such as time and
money that are needed to.

Access a clinical diagnosis and
highlight you know

the structure of our health care
system that has limited education and

health care services for
things like oxygen.

So finally this project addresses
questions that were concerning me

years ago when I started investigating.

What are the possible implications
of genetic information for

adults who are diagnosed.

Diagnosed with autism and as well as
families who have children who have

a diagnosis of autism and I found that
despite the enormous efforts in the quest

to understand our standing oxen through
genetic lens these insider perspectives

really tend to view genetic information
as having minimal levels of utility very

last I argue that the investment
made to map the human or

the artists in this case have yet
to meet the needs of the day without them.

So however I do want to point out that
the sheer amount of people institutions

technology and scientific research
surrounding this have really opened up

the major areas that are of concern and

it's communities such as adult services
family support and tools house

tools for parents and
people navigate the social world.

So when I started this research.

You know one of the first things I did was
the public and private funding projects.

And these types of services.

So in many ways the tsunami of autism
research has created new avenues for

people to raise awareness of autism in
different communities throughout the U.S.

the world's.

So I see lots of opportunities for
interdisciplinary research and

you know the first project I worked on
on an ox is a consisted of a geneticist

a neuro ethicist and
me I was emerging sociologists.

Those scientists and you know the types of

ideas that we generated and studied
really greater than the sum of its parts.

It was a really wonderful experience and

you know thinking about medicine
in the twenty first century.

It involves more than just physicians and
patients.

There's many other stakeholders
involved such as insurance companies

the pharmaceutical industry biotechnology
customer demands media epidemiological

research what it says and on and on.

Depending on the area of research
that you're interested in and

introducing their disciplinary
approach can help reveal and

better understand the complex nature of
science in the twenty first century and

because I'm trained in basic
science public health and

as a sociology I can see the benefits
of each of these disciplines.

Together is especially when tackling
you know things like the social

determinants of health.

I also see opportunities to going back to
the mix method and now this is my work and

know it research and can benefit
from quantitative analysis as well.

And maybe even thinking about
physiological analysis that

Commissioner bodily impacts.

You know acute and accumulate cumulative
Strasberg due to things like unemployment.

Unsafe living conditions
racism poverty etc I think if

we seriously why don't we trust issues of
opportunity and access in medicine and how

in the twenty first century we mustn't and
too social determinants of an upstream.

That are contributing to.

OK so I want to end because picture.

You know perhaps we can think of
The Wizard of Oz analogy that way

and different and useful way forward.

So each of us has a particular
strain of research agenda and

so I'm hoping this meeting is
about finding a destination.

That we can often skip it.

But also benefit in terms of our
collective conscious ition to

that that would be really.

Thank you.

Thank you.
A.

Great story of Jim Murray and Jennifer
about her she made it from the airport or

are not yet but I thought of the opening
here to talk a little bit about.

My research interests and one example
one example project a sort of context

was brought to me about looking for
opportunities both for us and for

ways to support access not the police or
law.

And I think about my research overall
on interests of the intersection of

policy at Vic's in the development
of emerging fine biotechnologies.

So I put it here sort of
a simple little systematic but

policy choice we can pick up it's
quite broad whether this is.

Whether we can regulation whether we
use legislation whether we structure of

institutions whether individual
incentives lots of different levers and

avenues here to think
about what it was and

how these range of policy towards this
affects the practice of polygamy.

So that's really the sort of
heard of my research program.

This is focused on a number of different
areas most in-depth on stem cell research.

I'll talk a little bit
about that in a bit.

But certainly one of the reasons
I'm interested about

medical research is its impact or
potential impact on health.

So we can think about all c
affecting a lot of the research and

then by a lot of research.

Hopefully potentially affecting
the provision of health care in the and

sort of the broader social good.

Of course you know Paul think doesn't
just work in this direction so

there's also a whole host of other areas
here I can't possibly show all of them but

I do think certainly all the replies
to medicine is within that as well and

some of my work has focused
on that area as well.

Still this is sort of a hopelessly
broad set of questions and

what is unified my work over the last
decade or so I guess has been an interest

in how ethical controversy played into
all of these this sort of scenario.

And so a lot of my work is focused on
how I feel culturally affects the.

Choices So I wrote extensively about.

The policy environments that result from
ethically contentious acknowledge each

arguing that we have environments that
are both heterogeneous and uncertain and

I'm pretty interested how that affects
the conduct of my local research so

I talk a lot more clout scientists
theory about how policy changes or

policy variation actually early on but
again at a party doesn't just affect

policy it might affect all of the research
directly or health care correctly and

other projects looking at all of those
briefly the in a separate report of

mentioned earlier is really focusing on
that middle arrow they're asking about

whether or not being a graduate student
in a field that is ethically contentious

leads to different sort of outcomes leads
to greater success or less success among

graduate students leads to different
kinds of choices that registrants me.

And so
on in this whole schematic sort of points

to Ideally what I'd like my research to
do is improve our oversight from working

technologies I am optimistic I'm fairly
bullish on the the advance of science and

I come from a science background as well.

Talked about in a minute.

Not that all science is good into
the pursuit without boundaries but

I tend to believe that if we think wisely
and carefully about how to get science

there really are a lot of promising
benefits for for society.

And so if I want to link this to
opportunity and access part of this

is about her my work is about facilitating
and accelerating scientific research and

hopefully medical treatments or
medical interventions.

But doing that and with care and caution
to make sure we don't go too fast and

cause problems in the field.

I love my time thinking about we've got
a lot of concerns where access is probably

actually hindered rather than supported by
the rapid acceleration of the science so

we can talk about.

So how do I get into this and
I sort of view myself as

studying science policy both to
advance science in to advance policy.

I am interested in the science I came
from a an undergraduate degree in science

then my master's degree was
working on the human genome.

Project.

I was doing computational work I was
writing computer programs to point things

in the genome but this was right at
the time the public project was racing

with the pipe project to see basically
who would own the human genome and

in some ways the policy that the issues
that were raised were more exciting to me

than the computer programming issues and
so I sort of the year and

out of a planned Ph D. in computational
biology and ended up doing a Ph D.

in science and technology policy
in have been sort of thinking

about how the whole thing over text by
medical science since part of that is I

really do think that you know project has
had lots of benefits that there are sort

of places where the promise and the hype
has not been that lived up here but

I do think there have
been lots of benefits.

I do with a lot of other
medical technologies.

Henschel for benefits as well.

And so I cope if my work even if just
effects of that on the single technology

take regenerative medicine where I spend
a lot of my time I think that's a great

outcome on on its own but I also
think this is an increasingly common

situation where new technologies new
by medical technology raise up and so

and so the hope is that there's also more
general lessons that come from studying

things like stem cells or new technology
that apply to other technologies or

even technologies that we haven't we
haven't thought about or imagine yet.

So you think there's sort
of both sides of this.

If you're seeing a little bit of
a repeat informant because all of

this because I've been asked to follow
the same general format here so

I'll say just a word about my
methodological preferences.

I'm in really I don't
have all a lot to say

here I'm more motivated by
the question than the method.

There's no method that I
feel uniquely attached to.

So I guess I would describe myself as
sort of a methodological generalist.

Rather I'd say What is the question
I really care about what

methods what got out there and I used to
work to address that as a result I do

both quantitative and qualitative
work I've done a number of surveys so

that tends to be fairly quantitative
I've surveyed stem cell scientists or

another by the researchers that.

And it's a project I'm working on right
now that's taking up most of my time

is a large survey of graduate
students in scientific fields but

I also recall to have interviews with some
grad students about you're here or not but

they're doing positive
interviews right now of

early career scientists that fits into
this project I've done some positive

interviews with patients who've gone
overseas for stem cell treatments and

that's actually the project I'll tell you
about in just a couple of minutes and

then I do your research sort of
opportunistically with interesting

available data and probably the single
paper I wrote in my time here to

protect that generate the most attention
and publicity had to do with egg donation.

So a slightly different topic but

sort of ethically contentious
forms of health care in there.

I studied a donor recruitment
advertisements that were placed

in college newspapers.

So things like that.

The technique.

It turns out the technique actually
of the policy against accepting and

donor advertisements.

But the Emory wheel
the Daily Princetonian or

whatever come Center all of these sorts
of places routinely have ever been.

Seeking to recruit female students
either advance undergrads or

more typically graduate students to like
to donate and donators maybe in airports

because you donate for a large sums of
money that's part of what I was in a lot

of different methods really whatever
I think works best to to address

the question right up until we were
asked to talk about one example project

in at a little bit of a hard time choosing
what I decide to talk about with some work

I've done to focus on the issue of stem
cell to work on and the reason I'll do

this is because I think it links in some
interesting ways to questions of access.

Although maybe not in the way that
the Jennifer agenda originally expected.

Part of stem cell tourism in
the policy issues rather actually about

restricting access thinking about
how you should restrict access or

when you should restrict access.

But first let me tell you what stem cell.

Tourism is it's a phenomenon of patients
typically leaving developed countries but

not exclusively in pursuit of a unproven
medical intervention that they

can acquire elsewhere.

So the typical case of
someone leaving say here.

Because they can't get the treatment
they want here in Georgia and

going to China or India or
Costa Rica or someplace like that for

a treatment that is has not been approved
here and may or may not be within

the regulatory system of the destination
country often sort of these are countries

where we could say weak regulatory regimes
in the in the health care arena in

the position can basically do what they
want with relatively little say but

still the conflicts with some interest in
this was actually a lot of policy concern

on the part of stem cell science and this
it had to do for a couple things one there

was a perception there was rapid growth in
this practice of stem cell treatment lots

of people traveling in going to places and
users a few of the clinics you could go to

sell medicine I believe as in Costa Rica
or Genesis El up within the country.

This guy has since been arrested but
he was up in stem cell therapy over

fifteen hundred patients three to one
he actually had office in Florida but

then would send patients
overseas after you had come and

met him in his Florida office and
these are just three examples of literally

hundreds of these sorts of clinics
that are popped up around the world

in the they were to drop sets of concerns
that motivated interested in stem cells so

tourism started when it was
a risk to individual patients.

Most of these interventions had
not gone through clinical trials.

So there was not no real data on
safety as well as no real data on

efficacy do they actually do anything.

Certainly concerns when you're injecting

orally characterize
cellular mixtures into for

instance people spinal fluid or brain stem
that there might be adverse consequences.

It turns out most of the clinics were not
very interested in following up with their

patients because they didn't want
to know about adverse consequences.

Just a hypothesis.

But certainly a concern about Enbrel
patients being harmed by this

also concern about the broader field.

So if you wonder why the leaders of
the stem cell policy community got

involved because they.

Didn't want a couple to come back from the
country X. with horrible adverse events.

It's the have them go to Congress and sort
of worries that the entire field will be

restricted in some way and
this might seem farfetched but

similar things have happened in so gene
therapy for instance that the average it

was in the United States but really clear
impact on the development of the field and

sort of a worry that policymakers
would not get that distinction.

So that because of the concern there
are restrictions the United States.

The F.D.A. has stepped in here and

has placed some restrictions on what
you've done trying to say you can't have

access to this sort of growing patient
driven movement saying we have a right to

access stem cell treatments quickly if
they're using the patient's own cells.

So in some cases it might be take cells
from you or I hear Me purify the nipple

a them in some way to inject them back
into the patient I'm sure that's a real

challenge for the F.D.A.
There are regulatory structures set up or

to deal with small molecules
things like aspirin like

sort of thing that is a biologic
this taken from our body and that.

But this was really
an exploratory project.

Not much was known about this
practice it's new and so

on just to show you you know in a minute
here two quick pretty quick studies.

This was the first project I worked on
in the area and they were trying to

see anything we could do to get at
the rise of this practice and so they

set up an opportunistic data why it's this
people don't talk about this very much.

There's no systematic data and so

we ended up doing with actually studying
patient flaws and so working with a team

of undergraduates your Georgia Tech to
which right now in college students.

We collected.

I think with ninety nine percent
confidence every patient blog on

the Internet in the English language dealt
with overseas stem cell treatments and

did some content analysis of them.

I don't have to talk about that but

the main result here is you can see
rapid growth not necessarily a number of

patients pursuing these treatments but at
least in the number of walking about you

can argue whether that's a good proxy or
not.

Many of these got some information where
they went to prickly China in the big

sort of shock here was it.

How many of these patients
were actually OK.

It's one two three years old.

The parents were taking them to get the
sort of on going treatment and that raised

a whole host of interesting patients the
other study I just want to briefly mention

had to do with qualitative interviews of
patients who had gone and then come back

sort of talking about their experience
in primarily their decision making.

I'm not a clinician I didn't really want
to talk to these patients about did you

get better or not I think
they'll be an interesting study.

But there's a lot of challenges
with that sort of approach but

understand how patients learned about
these interventions how they made

the decision to often spend enormous sums
of money thirty fifty eighty thousand

dollars to go to China or
India for one of these treatments.

And so this was a really small pilot
project just a small number of

interviews but enough to sort of
write some interesting perspective.

So I just thought I would like.

Anecdotal evidence with the overwhelming
driver here particularly in

person adolescents.

If you could talk to one person who
said they were better after this.

That would outweigh any number of risks or

sort of medical medical advice or
that sort of thing.

Well perception of risk was all but there
was no risk the US was just behind in

the field and so of course it made more
sense to go to China or India or wherever.

Lots of confusion among patients about
whether this was experimental or not.

And then that.

But this pic was from a paper I wrote
Leslie Wolf who is a health last caller of

Georgia state and we were looking at
the rules positions played in this

decision we actually found that
home country physicians or

your physician here in Atlanta played
a sort of interesting set of often sort

of permissive or encouraging goals
that that led people to pursue these

interventions is going as far as only one
case actually recommended treatment or

in many cases sort of passively but
this might make make sense.

And so I'm happy to talk more about
these later offline with people but

just two approaches to looking at
a growing phenomenon is that these

are posts or early stage exploratory
projects I think there's a lot of

opportunities in this specific
area through the medical.

Sure it is a medical tourism or
unproven intervention that particular.

Sort of access issues should
people have rights to this and

there are as I said a growing group
patient driven that believes they should.

Versus governmental interest
in mitigating risk.

There's a whole spectrum of therapy
providers from really quite legitimate

operations clinical trials essentially
that will provide out of trial access for

substantial fees to
complete scam artists and

dealing with that spectrum
is a big policy challenge.

There's a new emerging domestic market for

these treatments where people
open up their shop in for

the Atlanta to Texas wherever and just
basically thumb their nose at the F.D.A.

and say the F.D.A. doesn't have
the right to enforce it up the F.D.A.

does probably have the right but certainly
doesn't have the enforcement personnel to

enforce and so this is a really thriving
industry and a lot of challenges of

international coordination and regulation
dealing with if you want China to regulate

this that's a tough tough proposition but
maybe very important.

And so I just note you're on
the way of collaboration I have

in the early stages of it and
I suppose all related to this work.

I think there are maybe some
interesting possibilities for

interdisciplinary extensions to that.

And the broader list will
exactly what Jennifer says.

I think.

But the sort of a twist on emerging
technologies I think over the merging

technologies from stem cell and
genetic modification to neuro technologies

that were to think a lot about as well
as medical approaches so Tim and I were

both in a more tie our morning meeting
on predictive health but understanding

the challenges of advancing predictive
health I think most of disciplinary

periods really he took to both of these
areas and I think here at Georgia Tech.

I see his point.

Well positioned to play
an important role in that quickly.

Given the strengths of Georgia Tech and
some of them the technological side so

I will leave it there.

Thank you.

Thank you.

OK so.

Everybody.

Thanks to the organizers
of your fire on a Friday.

To come and
see us essentially blabber on about

things that we are super care about and
find intersections.

But.

So hopefully it's at least
somewhat interesting.

So the answer of the five are what
does your work address and what not.

Is mine search paradigm.

It's really about health and
social services to populations and

populations for
me has been defined in several ways.

Most predominantly probably eighty
percent of my work feels somewhat.

The predominant chunk of my work.

Access Services are dealt with severe and
persistent mental illness.

These are people with bipolar disorder
schizophrenia and minute depression.

So these are chronic long
term incurable diagnoses.

I've also done work with.

And who are risk for

interaction with the juvenile
justice system and talk more about.

The kinds of things that I
think about structures and

I think about how systems are structured.

So how do community organizations
Courtney their services particularly.

Complex and so for example if you are on
the high symptoms for schizophrenia.

You most likely don't have a job and
probably can't hold a long term job.

So you access on average thirteen
publicly funded services.

Including services high

tech both obviously mental health
services physical services.

Criminal justice services
to a large extent.

So how are these organizations
since they serve overlapping.

How do they make what they do so
that our tax dollars are sufficiently so

that people get what they need
in the way that they need but

that we're not caving services in
many ways this is a big problem with.

Services and so I look at things
like trust among agencies what

is their reputation for service provision
and what are the dynamics over time.

The kinds of methodology and my structural
analysis or social network analysis.

I would say that is my real counts.

That is my dominant methodology and

what people when they think of my work
they think that works first hand but

I also use other quantitative techniques
along with social network analysis like

her modeling that can I just for
the interdependency number.

A second area that I'm particularly
interested in is institutional.

So I would in a particular social service.

To me while I might choose to have
them provide it with a network

of service providers versus inside
vertically integrated organisations.

So why.

My hospital systems have acute
through tertiary care versus

farming out some of the kinds of services
that the community based organizations.

So what are those choices.

I have a paper that talks about the
pendulum that we can look over time and

see that some time for your ocracy.

Right now the fad I would say
that that is networks and.

We go back and
forth between those things and

likely there is that there
is a better balance.

I do a lot of conceptual work so the
concepts here are quality to work with.

And then finally because of my work
structure and looking at structure over

time I've developed this
expertise in changing how large

systems change particularly those systems
that deal with the large bureaucracy that.

Have to serve these complex populations.

And so if we want to me changes in
the way people get their mental health

services we probably also have to make
changes in the way they access handling

services substance abuse services and and
how care services and so when we want to

make a change that seems really distinct
where these populations with complex need

it actually spills over into other
side is thinking about how we fund.

And so on in the change.

I've done the work on leadership
how vision happens how

how we can achieve vision and how the
operational and organizational prophecy.

Do not align with vision which can
often be the downfall of big changes.

Here I really work out on it work.

I'm a huge fan of the technique
which is a technique.

For those number of pieces that
are too big to do in-depth comparative

case studies but still too small to do
a large and quantitative techniques and

so this technique was developed by a
comparative sociologist that looks at it.

I think it does not really but
it's compared.

And so it it uses Boolean algebra to

really do a systematic comparison
of possible complications.

So I'm a big big big
fan of that technique.

And all of this is and that is how policy
regulation financing very constrained.

So particularly with health care.

And poor health care to
low level populations so

disproportionately vulnerable
populations access Medicaid.

And so on Medicaid regulation incentives
or D. incentives particular kinds of.

Access to health care.

What are the regulations that
are put in place by either state or

local organizations that can
affect the way people access and.

OK So why did I choose this.

Well I started my graduate career and

I really fell in love with social network
analysis and so I was all that structure.

It was out like.

My dissertation chair did matter how
seemed like a really interesting

place to get data.

And so I did structure and I that's all
I really cared about was structure and

so I got really into the technique and
then I accepted a post-doc.

Carolina shops Center for Health Services
Research which is one of the world

centers and health services research and

through that experience
I I don't really differ.

The kind.

Why you research and so my training
business school you sort of like

these are really it's it's
about mostly efficiency.

And so and
why we're going to behave that way and

that the substance of the context
was really secondary to me and

then I started working on
projects during my postdoc and

I saw that these people really care
about people with mental illness but

they were mostly psychologists and
psychiatrists.

But they really cared about them and

it was different perspectives about what
the value was doing there and then I was.

Working on a project and I was doing
in individuals with schizophrenia and.

A large but the large group

on talking about it in this particular
state was an evaluation of the.

System and we were talking to about

how they perceive the care
that they got in this.

In this state and in front of my eyes.

Was perfectly stable.

And in the matter of forty five minutes
went into a schizophrenia right now.

As luck would have it
the person I was with.

But it's really the way that
I view this research and

so it wasn't this analytical thing.

It was really about like I knew
that my work had this potential to

make people better but
that was sort of in the abstract and

then when I saw that happen
right in front of me.

It really it.

It changed from an interesting application
to something that I care about.

And so it shows me.

I didn't choose it.

And the applications.

I'm much further and
other services services to carry so.

And so we were also I have to talk
about in the last contract and

so like Aaron I had a really hard time.

Because I think different projects that
I've worked on can illustrate different

different issues but.

They're really good series.

So I had a little bit about the models for
change project which

was one hundred million by the end
of the project it ended up being one

hundred twenty dollar investment by the
John Dean conference MacArthur Foundation.

My piece of that was about seven hundred
eighty five thousand five years.

I was I think the research that
were involved in this project.

Most of the money went into
service delivery and this this

project was really investing and

leveraging systems justice systems so

they wanted to share rational back to
the developmental e appropriate approach.

And why this project
interested me was that.

Before this I didn't know
much about juvenile justice.

What I did know was that a lot of those
kids needed mental health services and

come to find now that
actually most kids who

are in juvenile detention are not there.

They're delinquent because think they
have to be to to be sentenced to juvenile

justice but often parents will seek out
a judge when their kid is having trouble.

Asked it so that so they they actually
opt their kids into the juvenile justice

service because their kid needs services
and they can't get them in the community.

So if they can get their kid to be
sentenced to juvenile detention.

They are legally required to give them
the social services that they need.

So the estimate is about
eighty percent of kids

in juvenile justice detention centers.

Actually they're not criminal.

That's pretty chilling and

it's even worse chilling when you
were walk into this facility.

And you see that every
face in the ceiling.

And so there is a real problem
in this country with the way we

do juvenile justice and
the fact that there is high

disproportionate minority
contact with that system.

OK so that's what interested me

there because there were issues about
social services and mental health care and

the coordination and how that that
interacted with criminal justice system.

So that the original study for
sites the first site with Pennsylvania.

They chose to invest in services in
mental health care and aftercare So

this is after the kid gets
released from juvenile detention.

How do they work services so

that kid gets back into school
because in the state of Pennsylvania.

Even though the.

It's required to give them
an education until they're six.

To not have these kids in public school
as long as they provide an opportunity

to aftercare back into the services that.

They want to look at to incarceration so
since we know that.

Social services.

Let's not put them into juvenile justice
which is actually very very expensive.

Let's find Let's create things
that we know work for kids.

That are at risk for
contact with the justice system.

So these are things like
cycle education and

they also want to
concentrate on legislative.

Change.

That's.

And one of the big legislative issues
in Illinois is that in Illinois.

They wanted to get.

So if the state gets to determine
what age you are trying.

Some states fourteen.

That we know developmentally
a person's brain isn't

fully developed over twenty two.

And so there's a there was a big push to

to get in in Illinois at least to beat.

So the idea is if.

If you're too young to Piper
your country to be tried.

So actually during this project.

It was it was.

One minute.

OK so finally and so we did.

Lots of things.

So we want to look at them for change.

So dynamic capabilities change him for
flavor so

to affect change in a large system.

There were four there were four dynamic
capabilities that organizations could

develop operationally that then take
change their perceptions of the Finder.

So there were some negative perceptions.

From some of the local folks and so

we found we didn't we found that
that actually had some impact on

the way that implementation found out
that there are passages in intangible

capacities that create
these more collaborative

types that were being sought here and
that commitment as a construct is.

More uniform than previously thought.

Really quickly about

hunting impact as a research.

And that is all the groundbreaking idea

that come out the really really things
that shift the way we think about things.

A high percentage of them come
interdisciplinary tensions and

and coming those tensions is
a really really healthy thing.

And if we can get it and
respectfully to get out.

That's where our insight comes
from that's where they are.

And so maximizing on those tensions I
think is really whole whole thing for

me in my particular thing I think
this thing context matters of law and

I can have people think with me

about ethics and institutional.

Dynamics within a health care system.

I know about I don't have

to and

I.

With medicine here for others and of

others and
one thing that we care whether very very

best thing is a bad thing and
the importance of the world.

It's crazy in a very

good as it's repealed and you see it with

things today we understand
we discover something about

the world man and risk life and

of course with a mish mash of

what could be and what their central.

Reality finances are we
all recognize the ending.

Actually be

like the energy and excitement over there.

Yes And
I just discovering who can be right and

I think that connects
with the Institute for

the next one to

get us in the way because one of the
purposes of the vision and the execution.

Here is this to

begin with the question
that of course there is and

I push by fire.

Right.

And the reason I'm going to hear

about the benefits of marriage

could be really

pursuing maybe a plan which
is something like the next

time you were Raiders are you

brave and

you do you know

there are perspective

from a different conversation

I never thought and
you just have this really.

And

that's what I was thinking
along because I think it's I am

stupid always learning from others
that come from a different perspective

you know whether it's a contentious just
like student always have in your mind

that it's exciting and
other people in addition and

something that you have been thinking
about whether it can take you to

is that is another thing but I think
finding those is exciting especially

when people are receptive to have just

this very disciplined methodology

and here come here a little
bit binds us together.

This is because this is the other

one slightly different having different
perspectives on the process of discovery

don't actually get the information.

It's a question.

There's a living there.

That's a process.

You can do in isolation but
it's a real struggle hope

that Libya will lose you.

There are very

real issues to actually

help with

the

biggest problem

is that there

is really.

Very

parity.

I want to go to a place that was

just the structure of that system.

Really you know.

Trip in the U.K. And

I think it will be together with other
places where it has a very different

kind of Paris in it and

a diagnosis like characteristics

where I think this is necessarily
something that everybody

plays very

complex like China

which the country

is sort of Israel

on this is places like

here.

So you look real for

a couple pieces of information.

There was a boy or a waitress you're more
likely to was trying to actually go.

So you get this Mexico the tend
to be some of the stories or

the travel experience but

that's about the here he or

she is just rather than there
are bacteria interesting

to hear.